Stand Up to Cancer in your own way

Many of you may have heard that there is telethon being aired tonight on all three broadcast networks to raise funds for cancer research- Stand Up to Cancer.

You don't have to donate money to make a difference in the cancer battle. You can also exercise your rights as a voter and concerned citizen.

Next week, Dan is going to visit Senator Mikulski's office (D-MD) to encourage her support of S. 3187, The Lung Cancer Mortality Reduction Act of 2008. This bill would encourage lung cancer research, establishment of early detection screenings & create a Congressional Oversight Board to specifically target mproving survival statistics for lung cancer.

You may be able to help him during his visit.

Many people have asked us what they can do for us over the past few months. We've been thinking about how to use our blog to not only get the support we need, but also to educate others and try to make a difference in the continued fight against cancer. But we've struggled with how to let people help us, mostly because we are doing so well at the moment. And we've struggled with how to educate without coming off preachy. But we now have the opportunity to both ask for help & further cancer research at the same time.

Many of you may not know of the bleak statistics associated with lung cancer, which makes our fight that more difficult:

- Lung cancer is the leading cause of cancer deaths in the US in every ethnic group... 1 in every 3 cancer deaths
- Over 160,000 Americans will die this year alone from lung cancer. It will kill more than three times as many men as prostate cancer and nearly twice as many women as breast cancer
- Most people with lung cancer are diagnosed to late that they die within the first year


- Most people attribute lung cancer to smokers. However, all patients are stigmatized whether they smoked or not
- Over 60% of new patients are former smokers or people who never smoked at all
- 15% of people who get lung cancer have never smoked, like Dan or our friend Oliver
- One in five women being diagnosed now with lung cancer have never smoked

Despite these statistics, lung cancer research receives only 5% of cancer research dollars.

We need help raising awareness about lung cancer and elevating it to the proper levels so people like Dan or maybe even someone like me will have the best chance of beating the disease. It's not a disease that affects heavy smokers. It affects non-smokers, those who quite decades ago & those who never thought they fit the definition of a smoker.

And according to the medical definition, there is no such thing as a social smoker. A non-smoker is considered someone who has smoked 100 cigarettes or less. For those of us that used to enjoy a cigarette with our beers, those smokes add up pretty quickly. I am now worried that these decisions will come back to haunt me and many people like me who weren't fully educated.

Why isn't there more focus on lung cancer? Most assume it's because people bring the disease on themselves because they smoke. That is the reaction I get 100% of the time when I tell people what type of cancer Dan has- did he smoke? Simply not true.

And why aren't more people speaking out about lung cancer? Because most people who contract the disease die within the first year. There are no survivors to hold walks & events, only the loved ones left behind after cancer rips their world apart.

So when Dan goes to the Senator's office to meet with her staff next week, I am going to give him a letter to take with him. I want her to support this legislation, and any legislation that will end cancer for everyone. I want her to know about our life and why we need to focus more research dollars on lung cancer- so Dan can be here for a long time & we can prevent others from ever having to see the things we've seen.

This is where you can help. If you're a Maryland resident & would like to write a letter for Dan to deliver to Senator Mikulski, please email me at megrodgers11@yahoo.com and I will give you the form letter and our address.

I hope we can give Dan at least 10 letters. It's a small start, but it's important to raise this issue to our lawmakers. Many of them need more education with respect to lung cancer. And you help won't cost you more than 10 minutes of your time.

For more information on S. 3187, The Lung Cancer Mortality Reduction Act of 2008 visit
the Lung Cancer Alliance at http://www.lungcanceralliance.org/Senator_Stabenow_CoSponsor_PressRelease_8_11_08.html

Tarceva

So far, so good. I started taking Tarceva (oral chemotherapy pill) on Sunday. I haven’t noticed any changes yet. A rash, if any at this dose, will come 7-10 days after you start. Since I am only taking 25mg, I’m not anticipating one to develop. If a rash were to surface, I’m guessing one would come about a week or two after I start 50mg a day. Again, the normal dosage is 150mg. Tarceva does not have some of the side effects of traditional chemotherapy, such as low white blood cells or hair loss. Really the only thing to watch out for is the rash and diarrhea.

I’m hoping and praying that Tarceva will do the trick. The odds are not in my favor, but have they ever been in my favor? I’ve beaten all the odds so far. Since my case is so unique, I’ve just thrown most statistics out the window. The reason why some people are more or less likely to respond to Tarceva depends on a specific genetic mutation. I do not have any genetic mutations which in the long run are probably a good thing. However, in the short term and with respect to Tarceva, the drug actually works a little better with those that do have a mutation. Why am I still taking it you ask? Well, 20-25% of people like me (no genetic mutations) still respond. I feel very healthy right now and it’s time to take that chance. So keep the prayers and support coming. Meg and I love all your comments. Even if we can’t respond all the time, know that we read them and appreciate them. We are both selfless people, so we want to know what you are doing. Don’t be shy. What did you do over the holiday weekend? What are doing this week? Ok – off to watch Project Runway.

Summer Photos

Thought you'd enjoy a few photos of the summer as we ease into fall. Dan was able to start Tarceva over the weekend. He is starting a low dose and working his way up. He is feeling good so far, but the real test will be in a week or so when the dosage ramps up.

Right is a picture of our new BFF Nicole Ritchie. OK, so this is from the spring but it's still pretty funny. We ran into her in Starbuck's in Annapolis, MD. And yes, she is tiny!



Left- One of four ballparks we visited this season. Wrigley is my second favorite place to see a game after Fenway, which we were at for Opening Day. We also saw the Rockies & the Nats (and Dan represented for the O's/Sox game in Baltimore while I was stuck at work).










Right- Dan & Chris Spielman at the Livestrong Summit. Chris is an Ohio State alum & played in the NFL for the Lions. He took off an entire season in 1998 when his wife Stefanie was diagnosed with breast cancer.










Left- Us at Livestrong
















Left- Dan preparing for white water rafting. Believe me- don't listen to the guide when he suggests you take a dip in the Arkansas River. Coldest thing I've ever felt!














Left- At Jen & Roy's wedding in Colorado. The background scenery in this picture provided a magnificent backdrop for their ceremony. We don't look so bad ourselves.










Dan & Katie at breakfast this morning. I think I have a little competition from my niece. She really likes her Uncle Dan (or Danny as she calls him, even though no one else in my family does). This morning she grabbed his hand and said with a big smile- "I love you Danny!!!". My heart melted on the spot!

And moving on...

Just a brief note to thank you to everyone who has written after my "rant" yesterday (as Dan termed it). I do think that when Dan has a down moment, I take it much worse then during my own. What I posted was a bit blowing off steam, and a bit of personal note to him not to put it all on himself. But as Dan says, it's nice to have this blog to put it out there once, and get on with the day without dwelling on things. Sweet release.

Also, we have a few things to get straightened out with insurance so Dan will most likely start on the treatment early next week.

Plenty of things keeping us busy this weekend- Nationals game, looking for houses, trip to see the Waegers and maybe a much needed beer or two :) Where did the summer go?

The Real Deal

One thing I think about when writing these entries is how far we should really put ourselves out there. You want to let people know what is going on. You want to be super positive 100% of the time. There is almost a pressure to deliver results. And then there is my belief that in the end, people don't really want to know the whole story. It's too frightening to go there. Think about the last time someone asked you how it's going- what would his reaction have been if you started going off about your terrible boss or financial situation? Probably shock because all he really wants you to say is "things are good" and move on. He doesn't really want to know the true story.

And with cancer, even if you ask, you don't have any idea what it's like until you live with it every day. I didn't, even though I had friends with cancer. On the one hand, you gain a whole new perspective. On the other, not too many people have that same perspective. So while you have a heightened sense of what is important & how precious a week can become, most people walk through life without the same sense of urgency. Those of us in the fight start to hold ourselves up to high expectations & put those on others. How unfair those who end up disappointing you when they have no idea!

I say all this not because I am upset at anyone. Even though some people haven't been present where we thought we would, there are more than enough people who, despite distance & personal circumstances, have reached out & haven't been afraid to ask how it's really going. Even though it's tough, it would be truly impossible to get through every day without someone sending good thoughts. We need those posts & emails to pick us up.

I say this because last night I realized how much pressure we feel in this situation, Dan moreso than me. We don't want to let anyone down. We don't want people to know we get sad & scared, and we cry. We want to deliver results. We want to juggle work, the foundation & treatments effortlessly & flawlessly. We wanted Alimta to work forever, and it's upsetting that something we were so positive about didn't end up providing a lifelong solution. We are nervous about the reaction to Tarceva. We are even more nervous that it won't work.

As you can see keeping this things between the two of us is a lot pressure to put on ourselves on top of everything else. I don't think it does anyone any favors not to acknowledge these things. So even though you may not really want to know, I'm telling you. Cancer sucks. It's scary & it's hard. And you need to be able to say it & move on to the next step. Let it out, take a deep breath & get moving again.

Chocolate Therapy

What would you do when you hear bad news? After the doctors, I headed to dinner at a restaurant called the Burger Joint. I scarfed down a bacon cheese burger with smoked applewood bacon, rosemary, and a special sauce, a basket of sweet potato fries, and a cold Sierra Nevada on tap. It hit the spot!! (http://www.burgerjointdc.com/). The funny thing is I had hopes of eating healthy and maybe even taking a jog. But when I got home, the thought of diving into a face full of unhealthy food was too appealing and the burger joint is conveniently 2 blocks away. Afterwards, I headed across the street for a small Chocolate/Peanut Butter cone at Ben & Jerry’s. I doubt I needed the cone, but when it’s across the street – why not?

As for the results, I’m not really surprised. There’s growth. Realistically, I expected the cancer to grow. Call me pessimistic, but I haven’t had treatment in 3 months. The mass in both my left lung and liver grew ½ cm. In June, the tumors measured 2cm in diameter and now they are 2.5 cm. It’s not aggressive growth or modest growth, but typical. The more disappointing news is that there is another spot on my liver (measuring about1cm).

What am I feeling? Cancer sucks. It’s preventing Meghan and me from leading the perfect life. I understand that nobody has a perfect life, but it would nice to have the mental freedom to plan a future. To plan a wedding. To plan more than just a two weeks at a time. Right now, I’m scheduled to go on Tarceva – 25 mg a day. After two weeks, I will increase the dose to 50mg and two weeks later to 75mg. This was the game plan which came from the doctor in Colorado and my doctor agreed.

I feel like others were hoping for something different, so I’m sorry to disappoint. Were you hoping for the cancer to magically disappear? I still am, it is just that my mind had already switched to being optimistic about Tarceva. So keep the prayers and support coming! Our next check point is October 14th!

Regaining Control

After being diagnosed with cancer, you tend to lose control. Immediately, there is chaos followed by a wave of emotions – usually anger, fear, uncertainty, and feelings of isolation. We gradually learn more about the disease. We learn about what it does, the side effects, and changes to the body. We get back that control, but it takes time. Life doesn't stop just because someone has cancer. Cancer becomes a part of our lives, but it is not the only part. Life will never be the way it was before, but we cannot surrender to the disease. We do our part, make our way, go to work, and enjoy our time with others when we can. It is a “tricky” time as Meghan says because the cancer is still in there. But we do regain the control. None of us are helpless. We have the support of others. We have the experiences from before to draw on. We are not passive witnesses to our own lives. After tomorrow, I’m still going to have control.